Wednesday, August 6, 2014

Newport Beach (and a lot of CA beaches) have these totally awesome beach wheelchairs to borrow. The wheels were full of air so the chair glides along the sand. And it sorta floats in the water so Cis could catch waves. It was awesome! Totally made our dreaded beach day actually enjoyable. Cicily really loved getting in the water and floating on the waves. She even got to eat some sand and ocean water!

Cicily and I went on a few errands and wandered into the Newport LDS Temple. Cool surprise!

We spent a few days at Disneyland! Cicily got to ride the Teacups with Grandma Sue. Now when she watches her teacup video on her YouTube channel she signs Grandma!

Mom and Cicily Disneyland Day!!!

I have to say this was one of my favorite days of the whole vacation. Maya and Sophie wanted to hit the beach again with their cousins, and since Chris and I are only up for one beach day with Cicily, we split up. Dad took Maya and Sophie to the beach and Cicily and I had a solo day at Disneyland.

Cicily decided she wanted to be brave and give Splash Mountain another chance. She liked it this time, but only wanted to do it once that day. We figure if her brain wasn't getting in the way, she'd really enjoy roller coasters. She just can't handle the jerking movements very well in her body. Will there be roller coasters after this life?? I hope so!

Carousel. Rode at least 2 times. Loves the horses!

Small World of course!!!

Apparently you need some foot covering even in the Happiest Place on Earth and even if your feet never touch the ground. Cicily never wears shoes (lucky girl!!). And since it was a hot summer day she hates to wear socks so I didn't put any on her. Some of the Disney cast members didn't want to let it slide so we had to break down and buy some Minnie Mouse socks. We'll forgive Disney for their silly foot rule since they're extremely accomodating and inclusive for kids with disabilities.

Riding Big Thunder Mountain for the 4th time! Disneyland rebuilt Thunder Mtn. and it's so very smooth now. Cicily tried it out with Chris and I earlier in the week and really liked it! So we went on it over and over and over and over again and LOVED it on our day together. I so enjoyed my day with my adventurous Cicily.

Tuesday, August 5, 2014

This summer Cicily got to got to Camp Fiesta! She REALLY loved it!!! Her favorite part was making friends, both kids and adults, but they also had awesome activities each day.

There was a talent show on the last day of camp. Cicily's group did a dance to Everything is Awesome. It was a very unique and heartfelt show!

Cicily made a lava lamp one day. She liked the science class.

Every Thursday was a special day. This time was a carnival - complete with bounce house, games, prizes and treats.

Cooking class - making American flag rice krispy treats. Cicily was happy to give hers to her sisters when she got home.

Art class

Bowling!

Making a cloud out of Ivory soap. We tried this at home later and it didn't work out so well.

Ball room - a very favorite of Cicily's.

Ball room

Another special Thursday brought some lizards and snakes.
Of course that was popular with Cis!

Camp Fiesta is done by the city parks and recreation department. It runs M-Th for 4 hours for most of the summer. It is all for kids with special needs and it is amazing! I got to take Cicily on her first day. Such a lovely program. We're so glad she had 2 wonderful nurses to take her to camp each day. She's already looking forward to camp next year!

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Cicily at 8 years old

About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.